My Child, My Gift
A Positive Response to Serious Prenatal Diagnosis
Birth and Death Plans
The fear of death keeps us from living, not from dying. -- Paul C. Roud
My sweet baby Gianna
When others do not know you or forget you
FOREVER I will remember you
FOREVER I will love you
FOREVER my heart will ache for you
FOREVER I will hear the loud steady beats of your heart
FOREVER I will feel your strong kicks inside of me
My other children will grow and move on to the places that life takes them
FOREVER you will reside within me
FOREVER I will remember the moment you were born, the moment you began to die
FOREVER I will recall your sweet scent, your light breath
FOREVER I will long to hold you in my arms and
Trace my finger along your lips and ears
FOREVER I will feel the softness of your hair, your skin
You have transformed me
FOREVER I will pray to you
Until we meet again in HEAVEN
FOREVER I will thank God for giving me the greatest gift
FOREVER I will know His LOVE, His JOY, His HOPE
Sweet Baby Gianna
I will love you FOREVER
Doreen M. Nagurny (mom of Gianna who was born with Trisomy 13) 4/22/05
If you have received the news that your baby has a fatal condition, you are trying to adjust to your baby's birth and death. Your time with your baby is very limited. The time to love and nurture your baby is now. There may not be too much other time.
I knew as soon as she came out of my body the clock started to tick. Time was running out. I was prepared for a very short life for Grace. I even thought that maybe her time inside me was all I would get. I cherished every kick and move she made. (Christine, mom of Grace Ann who was born with Trisomy 18)
WHERE IS GOD?
As the parent of a dying child, you may question God. What is God doing? Here is a poem that may help.
My Life is but a weaving
Between my God and me;
I may not choose the colors,
He knows what they should be
For He can view the rainbow
Upon the upper side,
While I can see it only
On this, the under side.
Sometimes He weaves sorrow,
Which seems strange to me;
But I will trust His judgment,
And work on faithfully;
At last, when life is ended,
With Him I shall abide,
then I may view the rainbow
Upon the upper side;
Then I shall know the reason
Why pain with joy entwined,
Was woven in the fabric
Of life that God designed.
Parents with faith generally resolve their questions about God, but it may take time.
First, God is in control. Medical technology revealed Abigail's genetic defect, but no medical technology could fix it. No expert could tell us how severe her problems would be. No doctor could tell us whether she would be still born. Only God knew when she would come into the world and how many days she would have. Although He didn't tell us how long it would be, He did speak to us. Through His word, He assured us that He would be with us. He would listen to our prayers. He cares. None of us knows the number of days He has given each of us. After a short time we could all be together again forever. And so in a time of grief and sorrow, we found comfort and peace and even joy. (Steve, father of Abigail who was born with Trisomy 18)
You may be fortunate enough to have access to a perinatal hospice. Perinatal hospice will support you from the time of your baby's diagnosis through the pregnancy, birth, and death of your child and into the post partum period. Your local hospital or hospice will be able to tell you if a perinatal hospice is available.
I contacted Mary, the Assistant Vice President of Counseling Services and Director of the Perinatal and Pediatric Programs for Hospice Care Network. She had recently helped another mom when she was pregnant with a baby with a fatal condition. Mary helped us create a birthplan so that our wishes would be honored. Because of Mary's help, Walter and I began to feel a sense of control. We gained the courage and strength to advocate on behalf of our unborn child. Mary acted as a liaison between my doctor and me and also communicated with personnel at the hospital where I would be delivering. She provided bereavement support to my children on a weekly basis. Mary had also put me in contact with the other mom whom she recently helped. (Donna, mom of Jonathan who was born with Potter's Syndrome)
We really didn't need a lot of nursing care - we were the nurses. We did have a volunteer come in once a week - so I could spend time alone with my 2 other girls. If anyone brings a baby like this home, Hospice is the way to go. They were great. (Christine, mom of Grace Ann who was born with Trisomy 18)
If you do not have a perinatal hospice nearby, you can work with your physician and hospital staff to create a plan that works best for you.
By creating a birth plan, you are able to control certain aspects of your delivery. Most medical personnel are grateful for birth plans. Decades ago, dead or dying babies were whisked away in the mistaken idea that keeping the parents from seeing them spared the parents unnecessary anguish. Birth plans help the medical staff know just how you want you and your child to be treated.
Your initial consideration will be: Do you want comfort care or aggressive management for your child? Discuss both options with your doctor, and be sure that both you and the doctor understand the terms in the same way.
Two terms are bandied about: "Aggressive Management" (or "heroics"), and "Comfort Care". Parents need to discover what those terms mean to the medical personnel and the facility they choose. To one doctor, "comfort care" will consist of wrapping the child in a blanket and handing him to the parents. To another, comfort care includes feeding tubes, oxygen, and medicine to treat infections or other conditions. One doctor may consider "aggressive management" to be any help at all to a potentially terminal infant; another may consider it to be only life support and other extreme measures. We wanted a middle road. We wanted Sidney to have care, but not to be forced to live. (Laura, mom of Sidney who was born with a lethal form of dwarfism)
Once you determine a treatment option, you will want to focus on other details of the birth. Devise a plan that will work for you, your family, and your baby.
Do you want . . .
To have a private room?
To take photos?
To videotape the birth and the baby?
To have your children or others present at the birth?
To have visitors after the baby is born?
To breastfeed or express breastmilk for your baby?
To have a naming ceremony?
To have a member of the clergy present?
To bathe your baby?
To have your baby with you all the time?
To have your partner sleep in the room with you and the baby?
To have footprints, handprints of your baby?
To have molds of the baby's feet and hands?
To keep mementos such as the baby's blanket, cap, lock of hair, clothes the baby wore?
Record your wishes in the birth plan.
Share the birth plan with your physician and, when he or she agrees to it, have the final birth plan signed and notarized. Ask your physician if you ought to share the plan with the hospital staff in advance or ought you bring copies to the hospital when you are in labor. It's critical that everyone involved in the delivery know and agree with your birth plan.
I made a birth plan. We wanted no heroics. We wanted our child to die naturally and without pain and to be respected as the human being he/she was. I met with the director of nursing so the hospital would honor my requests. It was no problem I was told. We wanted the kids to be as involved as they could be. We already had a girl's name picked out--Janet Ruth, after my grandmother and Doran's mother. Joe and Abby picked the boy's name. Joe liked Luke and Abby liked Adam so it became Lucas Adam. (Sue, mom of Lucas Adam who was born with anencephaly)
A lot of resources were pulled together to create the birth plan: internet, Fetal Treatment Center, palliative care specialists. We were blazing new territory at our hospital; usually this type of situation is transferred to a larger hospital that sees this more frequently. Some of the things we wanted were out of the ordinary and required us to make arrangements ahead of time. So we had to meet with the neonatologists and the pediatrician that would be handling Abigail’s palliative care. (Mindy, mom of Abigail who was born with Trisomy 18)
Here is an actual birthplan which was used for Jonathan's birth.
Victoria Lynn or Jonathan Steven Dobkowski
Written by parents, Donna and Walter Dobkowski,(Revised April 13, 2003)
We have known for months that our unborn baby has been diagnosed with Bilateral Renal Agenesis, also known as Potter’s Syndrome. We have made an informed decision to carry this baby to term and keep our baby as long as possible. It is our priority to have our baby born alive. Please honor our request to preserve the dignity of our baby’s life. Please respect our following decisions:
1. We would like staff to be informed and aware of the situation.
2. Donna would like an epidural during labor. If complications arise for the baby during labor, in order to maximize the chances for a live birth, then we would like the option of having a C-section. We would want to properly medicate Donna so she does not have any pain during the procedure, but at the same time, we want to ensure that Donna is alert throughout it and that Walter is by her side. We want Donna to have as best physical outcome as possible, but our primary goal is to ensure that our baby has every chance to meet us and that he/ she is protected from unnecessary pain and suffering.
3. We request that a liaison (i.e. nurse, social worker, chaplain) periodically give updates to waiting family members.
4. If the baby is a girl, we would like her referred to as Victoria. If the baby is a boy, we would like him to be referred to as Jonathan.
5. We would like the doctor to cut the cord.
6. We would like for mechanical assistance (bagging only, no intubation) to be used only temporarily to try to initiate the baby’s breathing, if necessary, immediately after birth. We do not want any extraordinary measures taken to maintain breathing or initiate a heartbeat. After this is performed and after wiping and wrapping the baby, we request that our baby be handed to Mom/Dad and that weighing the baby, labs and confirmation of the diagnosis be postponed until later.
7. Our baby will be baptized as soon as possible after cutting the cord. This will be performed by Walter. We ask that the grandparents and our three children be present at this time if possible.
8. We would like our baby to stay with us at all times.
9. Our baby should be offered comfort care: feeding, bathing, swaddling and holding by his/her parents and family.
10. We wish to be with our baby and hold our baby at the time of death.
11. When our baby dies, we want some time to be together as a family alone.
12. We would like to be alone, away from other newborns before and after our baby’s birth.
13. We do not wish an autopsy to be performed.
We would like to keep the following items as keepsakes:
1. Bassinet card
3. Baby blanket
5. Hospital ID bracelet
6. Handprints/footprints (we have plaster molds)
7. Lock of hair
8. Birth certificate
9. Death certificate
To the staff of Labor/Delivery and Neonatal Units,
We have tried our best to prepare for this short time with our beloved baby. Thank you so much for helping us and supporting us through this celebration of our baby’s short but precious and meaningful life.
Donna F. Dobkowski, mother
Walter A. Dobkowski, father
Memories begin now, before your baby is born. You may want to keep a journal. You might create a scrapbook of ultrasound photos, of pregnant mom, and of other memorabilia. Or you may wish to have a family photo taken in which mom is clearly pregnant. Such a photo will actualize your baby's existence for the future. You may want to make your baby's blanket, cap or outfit or select them from the store. If your baby has a fatal diagnosis, have two blankets and two outfits, one to bury the baby in and the other to keep.
The time immediately after the birth may be the only time you will have to collect tangible memories of your child. Mementos may help in future healing and will give siblings a sense that their brother or sister really did exist.
The hand/feet molds are adorable, priceless!! But one of her right foot had a big air bubble and only got the heel! GRRR!!! We may buy one more kit and see if the mortician will try and get it for us; even if it's not how it was at birth, we'd still like to have it. I am sooooo glad Joyann made it to fullterm!!!! We were able to see her features and distinguishing characteristics and it was wonderful! Joyann has the characteristic crooked pinky that my mom and son, Joseph, share!!! How wonderful to know this! When the nurse took Joyann's little footprints for the hospital birth certificate, not all of her little toes showed up. The head nurse tried on 3 different birth certificates until she got all ten toes to show up! On her left pinky toe, she has the same thing as my hubby--her little toe is kind of sideways! Her other toes are just like mine. My hubby and I kept our angel Joyann with us for 10 hours after she died. We held her the whole time and marveled at her unbelievable beauty. The nurses and even the lab techs wanted to see our baby and were so kind and loving to us. They gave us a little crocheted blanket for Joyann that she laid on and I sleep with; they gave us a memory box with a lock of her dark brown hair (like mine). Her hair was soft and fuzzy. She had hair behind her ears and I rubbed it. She had actually pretty mild anencephaly. The nurses took pictures of Joyann with a little ring on her finger that we got to keep and with a beaded bracelet in pink and blue that said BABY. They dressed her in a little t-shirt that was open in the front and a matching cap with a ball on the top. They put an extra set of the t-shirt and other memorabilia in a little purple memory box for us to take home. (Jewell, mom of Joyanne who was born with anencephaly)
The hospital staff may prepare mementos for you. Ask them about this.
The nurse brought back Sydney’s The Foot Book. Inside the front cover, they had made imprints of Sydney’s little feet before they had brought her back to us. They had also taken pictures and video that we didn’t know until later. (Heather, mom of Sydney Grace who was born with brittle bone disease)
How will you display photos or mementos? How will you celebrate her birthday and/or death day? Each family must decide this for themselves.
There will be no viewing of her body, because I do not wish for her to be an object of curiosity. Her picture will not be hung on our wall with our family for the same reason. We have no shame of her, but we will protect her from being degraded by others. I want to hang Sidney's photo in our bedroom. Private enough for viewing, but not public enough for the neighbor boys to ridicule her. I just cannot subject that sweet child to the cruelty of those who would despise her just for her appearance. (Laura, mom of Sidney who was born with a lethal form of dwarfism)
My husband has a big beautiful picture of Andrew. We celebrate Andrew's birthday every year. Every year we acknowledge him. (Emily, mom of Andrew, who was born with Trisomy 13)
THE ACTUAL BIRTH
Some parents immediately bond with their babies.
All of her little things made her special to me. I didn't see Trisomy 18. I just saw my precious little girl. She wasn't the monster the doctors had painted for me -- she was just a little sweetheart. All she needed was love. Boy, did she get it! (Christine, mom of Grace Ann who was born with Trisomy 18)
Some parents take a bit longer.
When I saw Kelsey for the first time, I didn't truly feel sick, but I said to my sister, "I need to go back to my room. I'm not feeling well." I couldn't go back there. I didn't hold her for the first night. I thought what a terrible mother you are. I just couldn't handle it because it felt so, so overwhelming. She was so, so sick. I came around to being able to hold her, but it really was scary. They didn't think she would live for a day, and then two days, and then a week and then she wouldn't live for a month. And then she wouldn't live--that went on for her first 3 years. (Chylene, mom of Kelsey who was born with CMTC syndrome)
You may have time with your child. Each moment will be a blessing.
The biggest surprise was the incredible joy even with all the sorrow. Though she was so frail and near death, we cherished every moment, holding her in our arms the entire five days, afraid to sleep. Our other two children, Nathan (5) and Sarah (2), loved her without prejudice. The whole family gathered in the room for her first bath, and we laughed when she pooped on Grandma.(Steve, dad of Abigail who was born with Trisomy 18)
THE DECISION TO LET GO
Sometimes parents have to make difficult decisions for babies who are dying.
Sydney Grace was born September 17, 2000. She had the most lethal type of brittle bone disease. She had many fractures from being in the womb, some of which had already healed. I did get to hold Sydney about four hours after she was born. What a precious moment. Sydney was put on a respirator, but it was so hard to see her there. I was afraid to even touch her for fear of fracturing a bone. We made sure we did everything we could for her. We took lots of pictures (5 rolls), 2 videos, sang to her, read to her, let her see her big sister, and just let her know every moment that she was so loved. The hospital staff did everything they could. There would be no miraculous recovery. On September 22, it was obvious that she was in pain. We had not noticed this before. So, even though it broke our hearts, we made the heart-wrenching decision to have her taken off the respirator. We called our families and pastor and told them to come quickly so they could tell her good-bye. At 3:06 PM, about 30 minutes after the respirator was removed, Sydney passed away. We were allowed to stay in the room and spend as much time as we needed with her. We bathed her, dressed her, and basically just held her because we were not really able to do so while she was living. We ended up spending another five hours or so with her, although it was not really her, just her body. The hardest thing I ever had to do was hand my daughter over to the nurse, knowing I would never get to hold her on this Earth again. (Heather, mom of Sydney Grace who was born with brittle bone disease)
Your baby may die before your milk comes in. Having the milk but not the baby can be a special torture.
As painful as it was to have my milk come in, it is now just a little disappointing to have it drying up. It's like the last bit of my body's response to Sidney is going away. (Laura, mom of Sidney who was born with a lethal form of dwarfism)
You may want to donate your breast milk to a milk bank. Appendix B lists contact information.
Making arrangements for your baby's death, before your baby is born, can be very difficult. However, it's good to make those plans when you have the time to think clearly. If your baby survives, you can always discard the plans.
Doran and I went to the funeral home to make arrangements. I did ok until we looked at little caskets. How horrible. They were so little. Some looked like coolers but there was one -- we were told that the hospital provided that same casket free if our baby died while there. Even harder was picking out the cemetery plot. We would get 2 plots and Doran and I and the baby would be buried there. As we looked at plots, my baby was kicking and moving around. I had to retreat in tears to the van. I can't think of anything more horrific than planning a funeral while still feeling this little life. (Sue, mom of Lucas Adam who was born with anencephaly)
WHEN DEATH COMES
How will you react when death comes? Try not to be afraid. Most moms and dads parent their deceased children until they feel ready to relinquish their bodies.
We were told we could have as much time as we needed with Sydney. I asked if I could give Sydney a bath and a nurse brought the necessary supplies. She also brought materials for us to make our own footprints for Sydney. At one point I realized I had not taken Sydney to see the sunshine before she died. I started crying and Brian reminded me that she was now surrounded by sunshine. He was right. I took her over to the window anyway and asked Brian to take our picture. I also decided to give her her bath there. Brian helped bathe her and then we put lotion on her. After Kelsea takes baths, I still put lotion on her and each time the scent reminds me of Sydney. We dried her off and rocked her some more. I sang to her and read to her again. We took many pictures of us holding her. I tried to memorize every little detail about her. I ran her fingers, toes, and her hair against my lips, memorizing how they felt. (Heather, mom of Sydney Grace who was born with brittle bone disease)
I do not need a doctor to know that there is no life anymore. I cry and cry, partly because I am sad but mainly because I am happy to know for certain that Anouk's soul is now with God. Christophe cries, too, and it does me good. Before washing and dressing Anouk, we take her footprints and hand prints, because it is important for me to keep as many souvenirs as possible. After that, nothing keeps us at the hospital, and our children need us at home. There is neither bitterness nor lamentation and I do not regret for one second the last months. I am glad despite my sadness because "Death has been swallowed up in victory." We gave all our love to Anouk and now we can let her go. (Monika, mom of Anouk who was born with anencephaly)
Parenting the baby even after death brings peace and comfort.
Lucas Adam lived for 45 minutes. He never moved or cried but he did have his eyes open. He had my mouth and his daddy's eyes and long toes! He was beautiful and weighed 4 lbs 10 oz. He died peacefully in his daddy's arms. I had requested that he stay with me the night. I held him and rocked, sang lullabies he would never hear, sobbed and said my goodbyes. When I was ready I laid him down and slept the best sleep I had had in a long time. In the morning I told the doctor that I was going home. I needed to be with my family. The nurse came in with the casket. I cuddled Luke warmly into the yellow afghan I had made him, snuggled him comfortably into his final bed and the nurse took him away forever. Doran and the kids came soon after to pick me up. (Sue, mom of Lucas Adam who was born with anencephaly
AFTER THE BABY DIES
Do you want . . .
To keep any stuffed toy the baby had?
To write a letter to your baby and put it in the casket?
To decorate the casket?
To send birth/death announcements?
To take photos of flowers sent to you?
To press flowers to keep?
To buy a special candle for the funeral and then keep it to light on birthdays and holidays?
To make a photo album or scrapbook?
To plant a tree or other living plant in your child's memory?
To make a donation to charity in memory of your child?
To write your baby's story?
To make a memory box in which to keep your baby's mementos?
To write a poem for your baby?
If you would like to bring your baby's body home for a time, write this into the Birth Plan.
I remember thinking, "Wait a minute, he isn't moving, he's mottled and blue-ish, and his cord is white. He is dead!" I did not really expect that; I assumed he would die before being born. I had to absorb in a moment that this precious, wanted, beautiful baby was already gone. Time seemed to stop, but it was only seconds before I called for water to welcome him into Heaven through Baptism. We love him so! I caressed him, kissed him, and mothered him. Ray helped weigh Loren, bathed him, dressed him, then we took many photos of and with our son. My brother Jim came and held our boy for over an hour. The hospital priest arrived and baptized Loren again. We brought Loren home where he spent the night with us and had the chance to meet his older siblings and my sister as well as her daughter. Before driving Loren to the funeral home to make arrangements for cremation, Ray first drove Loren all around our town and neighborhood, showing him where he would've played and lived, and saying his farewell to our son. (Ann Marie, mom of Loren who was born with anencephaly) PRIVATE "TYPE=PICT;ALT=Ray, Ann Marie and Loren"
OBITUARIES, FUNERALS, AND MEMORIAL SERVICES
Some families put an obituary for their child into the newspaper. Here is Loren's obituary.
Loren Joseph Henninger
-Stillborn but Still Born-
Our precious son Loren was born September 20th and was born again into eternal life with Jesus that same day. Welcomed tenderly into the world by his parents, Ray Loren Henninger and Ann Marie Trebon. Loved and missed by his brother, Ean, and sisters, Erin, and Kate. Thanks to family and dear friends for their love and continued support. His life has been a blessing and a miracle and he is now at peace with our Creator. Memorials may be made to the Sequim Branch of the North Olympic Library System (2210 S. Peabody Port Angeles, WA 98362) to be used for the purchase of childrens' books. (Loren was born with anencephaly)
If you hold a funeral or memorial service for your child, you may wish to compose a program for those attending. Here is an example of one family's program.
Abigail Grace Wilsford
August 27-September 1, 2002
A Celebration of her Eternal Life:
September 14, 2002
Dear Brothers and Sisters in Christ, and Family and Friends:
Thank you so much for coming here today to help us celebrate the eternal life of our daughter and sister, Abigail Grace Wilsford. While our hearts are broken at giving her up, we feel blessed to have had her in our lives. She has changed us forever, and we want to share with you both our sorrow and joy.
We also wanted to tell you a bit about Abigail's story up until this day. . . . (Steven and Mindy, parents of Abigail Grace, born with Trisomy 18)
Here are excerpts from a funeral bulletin which also requested charitable donations in lieu of flowers:
To all of our family and friends:
We want to thank each of you for your unending prayers, support and compassion you have given us during this difficult time. We could not have gotten through this on our own. We have learned a lot along the way, especially God’s presence in our lives. We feel truly blessed to have our three beautiful healthy children and we feel Jonathan Steven will now be our guardian angel. We thank God for each of you and pray that God will bless you all.
A special thank you to Sister Pat; without her guidance and support, we would not have been able to endure the daily struggles.
Another special thank you to Mary Gravina from Hospice. She has taught us how to deal gracefully with difficult issues with our children in an open and honest manner.
Donations can be made in the name of Jonathan Steven Dobkowski to:
Hospice Care Network
14 Shore Lane
Bay Shore, NY 11706
c/o Mary Gravina
God bless you,
Donna and Walter Dobkowski (from the funeral bulletin for Jonathan Dobkowski who was born with Potter's Syndrome)
Some families have a public, social gathering after the funeral or memorial service.
We spent the week after Loren's death planning a funeral liturgy. We chose the reading, readers, prayers of the faithful, music, and poetry we would read. This celebration of Loren's life was held in our church, with a potluck luncheon following at our home. (Ann Marie, mom of Loren who was born with anencephaly
Some families do not want a large, public service. .
We have decided not to have a funeral. Those who did know her are grieving her loss, and in no condition to speak, and a public event is not something I can bear now. (Laura, mom of Sidney who was born with a lethal form of dwarfism)
We buried Luke on a bright sunny day. We had a family only graveside service. The kids let off balloons to go to heaven for Luke. They had a great time competing to see whose would get there first! Then it was done, except it still isn't a year later. Luke left us for another place, but he is still with us. He brought us so much. (Sue, mom of Lucas Adam who was born with anencephaly)
The strength of your grief may startle you. You grieve because you love. You grieve not only the immediate loss of your child but also your future with him or her.
Today I miss her very much. The other kids help, but do not replace that intense need which a newborn would have. That is the difference in grieving between a mother and a father. The mother is constantly aware of the presence of the baby, the father is not. He notices and pays attention when the baby requires attention. When an infant dies, the mother is constantly aware of the baby's absence, as though a part of herself were missing. The father may be affected by the loss only when he thinks about it. The loss is different to each. (Laura, mom of Sidney who was born with a lethal form of dwarfism)
You may experience any or all of these reactions:
· Preoccupation with thoughts of the baby.
· Heightened impatience, frustration, lack of direction, indecisiveness, fear, despair, worry, yearning for comfort, anger, carelessness, numbness, guilt, resentment toward others.
· Physical problems such as difficulty breathing, sleeplessness, fatigue, depression, spontaneous crying, empty feeling, appetite changes, tightness in the throat, racing heartbeat.
· Obsessions with cleaning, health, well being of other children or spouse, work, cleanliness, food, exercise, harmful substances such as drugs or alcohol.
You can have these reactions if your baby is still born or if he lives for a while and then dies.
Surviving the loss of my Karlee Rose (Note: at the age of two years) has been the most difficult time of my life. It's just plain hard work. And it never goes away. The pain (excruciating) is always there. Time does make that pain not come to the surface as often. Brad and I cried, and prayed and talked (just like when we found out about her birth defect) and cried. I read tons of books on the loss of a child. I found an internet web ring called "Empty Arms" and read, and read, and read. It helped to know I was not the only one to lose a child. I joined an internet support group, and Brad and I went to grief counseling. The 'firsts' were so very difficult -- first time back to church (ouch!), first time to the hairdresser, dentist, grocery store (another ouch), back to school. (Katie, mom of Karlee Rose, Benal, and Nikki, all of whom were born with spina bifida)
The persistence of grief may surprise you. At unexpected moments, memories may spring up and tears flow. One mother compared her seven year grief journey to a roller coaster ride. You never know where the peaks, dips, and curves are, but you know that they exist, that they will suddenly be upon you, and that you will hang on for dear life when you encounter them. You also know you'll survive the ride and, at some point, climb off. Let the tears flow as often and as intensely as they come. Do not fight grief, but let it carry you along like a wave until its power abates. There is healing in the tears.
At times my arms ached so much I couldn't use them. I thought I was losing my mind and my faith. The pain of mourning, the loss of a child, I don't think can be compared. We know that truth is absolute, because God is truth. We must be made into His image not He into ours. To follow the same path that He walked. What immeasurable glory, that He would raise my human dignity to follow His path of suffering and so to be made into His likeness. What similarities to Our Lady's suffering! I glimpse the extent of her love for God and for us. (Jeanne, mom of Maria G. who was born with Trisomy 18)
Certain dates and anniversaries can be especially difficult. Make plans for those dates. Invite friends over or decide to do something special. You may wish to share this essay with others.
My baby died. It is the most tragic thing that has happened in my life. I know it makes you uncomfortable. I know you want to help. Please try, but do not try to fix me.
Share your faith with me. It helps mine be stronger, but do not try to tell me how I should feel if I really believe. Believing, even knowing, does not remove grief.
Do not tell me there is hope in Jesus and expect it to take away the pain. I know the doctrine - it offers me great comfort and it helps me endure, but does not replace the presence of my beloved child.
Do not tell me that I will see my child again as though I have forgotten in my grief. I know that, but it does not make me miss her less now or take away the loneliness.
Do not belittle the short time she had as though she had no power to touch others. Her life has greater meaning than those minutes and her mission reached beyond her own life.
Do not tell me she was perfect as though the honor of having a perfect child should compensate for her absence. I know she was perfect, I felt her.
Do not try to comfort me by telling me it would have been hard to care for her with the problems she had. I loved and wanted her anyway and I was willing to face any hardship for her.
And please do not tell me she is happier now as though I should be glad to let her go. It is the absence of her joyful spirit that leaves such a void now.
It is the motive behind your words that makes them appropriate or not. I can feel when you love me, or when you are trying to educate me out of my loss.
Please do not ignore my loss and avoid me. Please have the courage to ask me how I am, even if you fear my tears. You don't have to know what to say, I will understand. I just want to know you care.
Please tell me you are sorry, or that you would like to take it away my pain if you could.
Tell me you love me and would have liked to know my child. It may cause me pain if you mention her name but I need you to do so, because it will also offer me the comfort that someone other than just me remembers her, and I need to know that. Fumbling words from a sincere heart mean more to me than trite phrases that sound good on the surface.
If you tell me that I can call you if I need anything, I won't do it. I may not be capable of asking for help when I need it most, or I may not be able to ask for what I really need.
If you offer something and I do not want it today, I may need it tomorrow, so please do not be offended if I refuse your offer. My feelings change frequently, and sometimes I may not even know what it is I need. I appreciate it so much when someone truly listens to the Holy Spirit and performs a kind and thoughtful act.
If I feel anger at God, it does not mean I lost my faith. It just means this is so big and so heartbreaking that I do not understand why the Lord let it happen the way it did. But I will in time. I know He has a plan forme and this will work for my good. I am still confused and hurt that it happened, but I still have faith. I know there are blessings in this, I have felt them. I know they were worth it, but I still hurt.
Please bring meals or flowers if you want to. They are a tangible reminder that someone cared enough to take time to try to comfort me. But also stop to listen so I know it is more than just a gesture.
And give me the time I need - it might be much longer than you think. Do not try to rush me through to being ok again.
Do not try to fix me. I am not broken. I am only grieving. Just love me, and I will survive.
(Copyright 2005 by Laura Wheeler, mom of Sidney who was born with lethal dwarfism. Reprinted with permission from Carrying to Term with a Negative Prenatal Diagnosis, sidneyfaith.ws/sidney/grief.htm)
Some parents experience something mystical after their child's death.
I remember every single detail about the morning that Karlee died. It was horrible, tragic. BUT there was one moment that was magical. When they finally let me in the emergency room, she had already passed. I was alone with her. Her spirit was there in the room. I felt her and she was at peace, happy, joyful. She was floating above us and happy. She was getting ready to watch Blues Clues, her favorite show. And I had an insane peaceful feeling that she was safe. Nothing more could cause her pain. She was where she needed to be. Then, in a flash, her spirit was gone. (Katie, mom of Karlee Rose, Benal, and Nikki, all of whom were born with spina bifidia)
That night after Lucas Adam died, I woke out of a sound sleep. One of the kids was standing by my bed and needed something. This happened often. Whoever it was would stand there looking at me until I woke up. For some reason they never touched me and I usually woke up before they spoke so this night was no different than usual. I rolled over and no one was there, yet someone was. I felt him. I think Luke came to tell me he was ok. Then he was gone. (Sue, mom of Lucas Adam who was born with anencephaly)
In the past five weeks since Maria’s entrance into Paradise, I’ve often wondered, How do the children in Heaven spend their days? Do they run, jump and play as children on earth or do they spend all of their time adoring the most Holy and Blessed Trinity? So, I asked Our Lord if He would give me a sign; some indication that Maria was okay, in Heaven and happy. A couple of weeks passed, and I received a phone call for my husband from someone I didn’t know. During our conversation, the woman happened to mention a dream that her 12 year-old daughter, Holly, had recently. Holly dreamed that she went to Heaven. There were rainbows everywhere with puffy clouds, a big gate and Jesus and Mary were there sitting on thrones that were made of clouds. And there were babies everywhere sliding down the rainbows! I burst into tears of ecstasy. Thank you, Jesus! My little girl is okay, she is blessed, she is bounteous in Heaven with all of the other babies who have moved on. And she is running, jumping and sliding down rainbows all the day long! (Terri, mom of Maria D. who was born with spina bifida and fatal physical conditions)
SIBLINGS AND GRIEF
If you have other children and your new baby has a fatal condition, you will have to deal with your older children's grief. Here are some suggestions:
Be honest with your children.
Use age-appropriate language to help children understand what is happening.
Listen to their fears, hurts, anger, and concerns.
Learn to use words that encourage them to talk about their feelings: "How does that make you feel?" "Do you want to talk about it?" "Is there anything I can do to help you feel better?" "Thank you for telling me that. You are a very brave person." "I know you are hurting, but I'm always here for you." "It's OK to cry."
Help children say good-bye to their brother or sister: write a letter, draw a picture, write a poem, make something for the funeral.
We also encouraged (our other children) to make or to select something special to place in the casket from them. My mom found a boy's white and blue sleeper that actually had wings and said "Angel Baby" on it. (Sue, mom of Lucas Adam who was born with anencephaly)
Celebrate the memory of their sibling: plant a tree, make a special garden, donate to a charity, make a scrapbook of memories, blow bubbles on a windy hill, or fly a kite with the baby's name attached to the string.
Keep the baby's picture in a place of honor.
Talk about their brother or sister on special days, such as their sibling's birthday. You might even have a birthday party.
Laugh and remember the good times together.
People may expect you to get "back to normal" especially if your baby didn't survive very long.
I answered the phone, and his mother asked me how I was doing, then cheerfully said, "Well, its back to life as usual for you then!" I called Kevin to the phone because I just could not talk to her. No, it is not back to life as usual. I am forever changed. Normality will come back in a different form than before. (Laura, mom of Sidney who was born with a lethal form of dwarfism)
Try to find people who will support you wherever you are in your grief journey.
It's good to know that others are out there who survived it. After Casey died, when people started to find out, a lot of people told me that they had experienced something similar. Talking to those people was the biggest help. The ones who had been through the same thing got me through it. You think you will never feel joy again. When you start to feel better, you feel guilty. You get over that. (Sandy, mom of Casey who was born with Trisomy 18)
What do you say if folks ask how many children you have? Do you include your baby who died or not?
Each parent must come to his or her own solution to this problem. Here are some possible answers to the question:
"We have five kids, three here and two in heaven."
"We have one child but she's with God."
"Our first baby died. Thanks for asking."
Nancy Halco has three living children and two who have died. Her living children figured out how to respond when someone asks Nancy, "How many children do you have?" She replies, "Three down and two up."
WHO ARE YOU?
Children whose parents have died are called orphans. Spouses whose spouse has died are called widowers or widows. What should you be called if your baby dies, before or after birth?
We offer this suggestion. Claim the title of parent.
Parents with a child in Heaven are still mothers and fathers...and they have the challenge of grieving and loving and cherishing a child from a most painful distance. Whether our children are safe with us or resting in the arms of God, we are still their mothers and fathers...and they remain our precious babes. (Tracy Webb, Elizabeth Ministries)
We still call ourselves Nathan's mother and father, and although sometimes that might cause discomfort on the part of the person we're talking with, it's important for them to see us as his parents. I say "I've had three children. Emilie is 26, Matthew is 21, and our middle child, Nathan, died of a rare genetic disease at the age of 14." (Jennifer, mom of Nathan who was born with Menke's Disease)
Mothers and fathers heal at different rates. Try to be patient with your spouse's timetable.
Another unforeseen blessing is the drawing together of our family. I love my wife a little more. I love my children a little more. I hug them all a little more tightly and a little more often. I love my family, friends, and neighbors, even strangers a little more. I cherish my very short time on the earth a little more. And I’m much more careful to make my salvation sure so that I can see Abigail Grace again soon. All this is by choice. Be patient, especially with your wife. What is ahead is a battle of sorts. Fight uncertainty with knowledge. Fight sorrow with joy, Fight bitterness with love. (Steve, dad of Abigail who was born with Trisomy 18)
Your spouse can help in the healing, just by being there.
When I was holding Kevin's hand in Wal-Mart I told him, "I have no baby to hold, so you will have to substitute!" I meant it jokingly, but it has some truth. Having extra time and comfort from those I am closest to helps fill the gap some. And Kevin is the one I need it from most. (Laura, mom of Sidney who was born with a lethal form of dwarfism)
Healing takes time, but it does come.
Our spiritual faith has been unbelievably strengthened. We have learned the true meaning of unconditional love. I, personally, have learned who is REALLY in control and it is not me! I can accept anything and I can accomplish anything. Our kids know we will sacrifice anything for them. I have found a true community of faith in our church. I will never be able to repay all the people who supported us and accepted Luke despite his diagnosis. These people never saw Luke or felt him but still supported him through me. (Sue, mom of Lucas Adam who was born with anencephaly)
One way to foster healing is by doing something good for others.
After Gianna was born and died, my emotions took a standstill. Instead of taking the time to grieve, I ran headlong into the busyness of life Not wanting to go to a quiet place and cry, I carried myself into a depression. My doctor was very supportive and first recommended counseling and then my volunteering at a free clinic. By reaching out to other people, I was able to begin the healing process. Instead of escaping, I allowed God to lead me. Each day I place myself in His hands, asking Him to send signals loud enough that I may respond in order to assist someone in need. (Doreen, mom of Gianna who was born with Trisomy 13)
I learned that I just cannot participate in the decision making boards; it is too hard. It makes me physically ill to do so. So, as Sidney's legacy, I built a website on Carrying to Term at http://sidneyfaith.ws/sidney/ (Laura, mom of Sidney who was born with a lethal form of dwarfism)
Faith in an eternal afterlife helps many families to heal.
The only way we are getting through this is with the knowledge that we will definitely see our daughter again. We will be able to hold her and kiss her and not have to worry about hurting her. She will get to meet her two baby brothers who have done so much to heal our hearts and see her big sister again. Our family will finally once again be whole and there will be no more goodbyes. (Heather, mom of Sydney Grace)
Our job as parents is to get our kids into heaven, and I have one up there. (Sandy, mom of Casey who was born with Trisomy 18)
 Susan Helling, "The Ride." You Will Dream New Dreams, by Stanley Klein and Kim Schive, Eds. New York, New York: Kensington Books, 2001, pp. 201-4.
 Adapted from Susan Titus Osborn and Janet Lynn Mitchell. A Special Kind of Love: For Those Who Love Children with Special Needs. Nashville, Tennessee: Broadman and Holman Pubishers, 2003, p. 142.